I saw a picture a few days ago, and it’s been on my mind ever since. The image was that of an older woman sitting alone on a bench looking off into the distance. The caption said, “Alzheimer’s isn’t contagious.”

As advocates, we place a great deal of emphasis on funding for research – we think a lot about the future – hopefully one without Alzheimer’s. And all of that is tremendously important. However, the image of that lonely woman reminds us we must also focus on those living with the disease today.

Lonely Days

How many dementia patients sit alone in a facility, day after day, month after month, and year after year? One might argue that technically they aren’t alone; there are people around, the hustle and bustle of daily goings on, shower time, mealtime, and an occasional balloon volleyball game.

Don’t fool yourself – they are alone.

This begs the question, why do friends and family head for the hills when they hear the word “Alzheimer’s?” It’s something I see mentioned regularly in various caregiver forums. In addition, more and more courageous individuals who are in the earliest stages of the disease are speaking out; these are folks who still have so much to contribute to the world, yet at the first mention of the “A” word, people begin writing them off.

Here Today, Gone Tomorrow

So why is this post-diagnosis mass exodus so common?

Is it the fear of being asked for help? Is it too difficult for them to see? Do they just not want to be bothered? Or do they think the person is already gone so there’s no sense in visiting?

Not many would admit to most of these, though I have had a few people tell me it was just “too hard” for them to see my mom “that way.”

One can only imagine how egocentric that sounds to a caregiver who faces the tremendously harsh reality of Alzheimer’s every day. I think all caregivers will agree it’s no picnic for us to watch a loved one slowly drift away into the world of Alzheimer’s, but we weren’t given a choice in the matter. However, every moment we spend with them is ultimately a beautiful blessing.

Food for Thought

I want people to understand several critical points, and if reading these words encourages just one person to visit a friend with dementia, I’ll consider that a victory.

Regardless of how far along someone is in the disease, in many ways, they are still same person. Perhaps they have difficulty communicating and can’t do the things they once could, but they are very much alive. My mom’s spirit and spunk, along with many of her other personality traits were apparent until the very end. She was still Marilyn through and through.

You have the power to give one of the most precious gifts in the world – a simple moment of joy – to an Alzheimer’s patient. It doesn’t cost a dime, just the time it takes to sit and talk with them, stop by with a favorite treat, or simply hold their hand for awhile. Sure, they’ll forget the visit, but the way you made them feel will remain. You will have brightened their day and what could possibly be more important than that?

Our situation was pretty typical; very early on, even while my mom was still at home visits became less frequent. Eventually, most everyone had disappeared. But I think those few who did remain stalwart supporters would tell you they reaped rewards beyond measure by spending that precious time with Mom. I would venture a guess that as difficult as it was for them to watch their friend decline at the hand of Alzheimer’s, they felt they received back just as much as they gave. The love, warmth, and yes, the joy, of connecting with an Alzheimer’s patient is a unique and special gift.

Glass Half Full or Half Empty?

One might lament the fact that “she’s a mere shell of the person she used to be,” and there’s no doubt this is one of the most heartbreaking, devastating diseases that exists. But even in the worst of circumstances, there is room for a bit of the “glass half full” mentality.

Remember that even after a person with Alzheimer’s can no longer speak, they need love and affection. They don’t cease to be a human being.

You can’t put a value on a simple smile or a gentle touch. It definitely requires stepping outside of one’s comfort zone and setting aside the deep personal sadness and fear that may exist. However, it’s likely the 30 minutes you spend with an Alzheimer’s patient will be the most meaningful part of your day.

Reblogged this on Going Gentle Into That Good Night and commented:
This is a compelling post by Ann Napoletan, a fellow Alzheimer’s Disease and dementia caregiving blogger and a friend, about something that all of us who’ve been on or are on this journey have witnessed and experienced firsthand.

We’ve seen it with our loved ones and we seen it with other people suffering from dementias and Alzheimer’s Disease who, before all this were loved ones to somebody or somebodies, but who ceased to exist, it seems, once the diseases set in and took hold.

This quote is a good summary:
“Is it the fear of being asked for help? Is it too difficult for them to see? Do they just not want to be bothered? Or do they think the person is already gone so there’s no sense in visiting?

Not many would admit to most of these, though I have had a few people tell me it was just ‘too hard’ for them to see my mom ‘that way.’

One can only imagine how egocentric that sounds to a caregiver who faces the tremendously harsh reality of Alzheimer’s every day. I think all caregivers will agree it’s no picnic for us to watch a loved one slowly drift away into the world of Alzheimer’s, but we weren’t given a choice in the matter. However, every moment we spend with them is ultimately a beautiful blessing.”

There is no stigma and never has been…I do not know where this came from…I have never seen any evidence of a stigma which is defined as a badge of shame…the fact that no one want to bother with them anymore or uses the excuse and not being able to handle the trauma of it all and simply they do not know what to do. does not in any way validate it…maybe it is a UK thing…I have even written an essay and what to do that is on June’s website…you won’t find the word in the huge Mayo Clinic’s 383 page textbook on Alzheimer’s…they have a several page index..the word does not appear because they also know it does not exist…lets call it what it is…selfishness and not attach a term for a non existant situation…I have been dealing with this disease for 20 years and am amazed that I still see this term used…my daughter has been a professional in the business for 35 years and agrees with me…

Thank you, I needed this. I do feel the exodus daily. It is hard for me to accept this, live this everyday. Only those who walk this understand. It helps so much to know others live it too when at times I feel alone.

So beautiful and true, Ann. Everyone disappeared when my mom’s Alzheimer’s became severe–even her husband. My brother could only manage one or two visits a year, each visit fast, an hour or two even though he had to travel some distance to visit. My husband Vic and I were her only regular visitors. In the last years, Mom was deeply inside herself and unresponsive, but she still needed to be touched and she needed a lullaby.

I look forward to sharing this piece because people need to know. Your site is beautiful, by the way, and I appreciate all the advocacy work you do and how you share your hard and beautiful experiences with your mom.

Thank you for all of the kind words, Elaine. This topic is a difficult one, but it’s something that needs to be discussed. The only chance we have at getting beyond the fear and stigma through educating people. It broke my heart that so few people came to see my mom… but I think without exception, the ones who did visit broke through that wall and would be much less hesitant in the future. At least I hope that’s the case. Much love, Ann